Sunday, March 13, 2011

So Far... So Good!

I’m doing GREAT! The burning in my lungs has gone and I am now down to 2 mgs of Prednisone every other day. I have some sore pain in my knee and in some other joints but it really comes and goes. I think it is typical for what I have seen in the past while stepping down on the medications.

My kidneys still hurt on and off, but I think that they are getting better too. I have to go to the doctor for a quick blood test to make sure the potassium tablets are working right, but I expect they are based on the relief I have had from the digestive “issues”.

All in all, I’m still optimistic.


Sunday, March 6, 2011

Tempting fate… but with hope!

My son and I managed to make it to the mountains with the other scouts, got our tents setup, built a fire, cooked and eat an amazing Wal-Mart stew (anything taste good when you are cold and hungry) and get ready to settle in when I realized I forgot my medication! Arg!

I had forgotten to take my morning medications in all the hurry to get out and then with the smoke from all the camp fires my lungs were hurting. I could miss one dose without too much trouble, but I knew I couldn't miss two. So my son and I took the 100 mile round trip to go back and pick it up. Everything worked out though. My son and I had a great talk and we even helped a lady who's car got stuck in a snow bank on our way back. (It was a scout trip after all.) All in all it was a great trip! =)

My lungs did hurt for a few days after though. I'm not sure if it was the smoke or messing with the medication, but I am guessing it was the medications. It settled down again after I got back into the normal swing of things.

In an earlier post I had mentioned how the methylprednisolone (Medrol) had been working well for me. The only noticeable difference was some irritable bowels, but I didn't think much of it. Things got busy and several months went by without me going to my regular monthly doctor’s appointments. Well when I finally went back and got a blood test it turns out that I have been low on potassium. Apparently being low on potassium throws off you systems and can cause irritable bowels. (I have really got to start listening to my body… and not missing doctor’s appointments.) The doctor prescribed potassium pills and the problem has gone away. I need to go in for follow-up blood work this week, but I expect everything will be fine.

When I met with my doctor we discussed how I was doing and determined that I was doing well enough to see if I can get completely off the prednisone! =)
I have begun a step down from 4 mgs a day to ---> 4 mgs one day then 2 mgs the second then back to 4 mgs to ---> 2 mgs every day to ---> 2mgs every other day to ---> No Prednisone! So far so good. Right now I am on the 2 mgs every day. My lungs have been burning a bit, but it seems to only happen during the first few days I step down. I am hopeful that it will settle down in the next few days.

Right now I am not experiencing any visible manifestations of sarcoid. My joints and shins are good and no sores or other problems. The only thing left is some burning in my lungs. I plan to go see my lung doctor and get another x-ray soon to see how the lungs are coming.

If I am having problems in my lungs and they aren't bad I may decide to just deal with them instead of dealing with the side effects of the drugs. Sometimes you have to ask yourself if the cure is worse than the illness. I know I’m going to have to really think about this and consult with my doctors. I don’t want to kick the sarcoid back into high gear, but at the same time I find myself wondering if the side effects of the medications aren’t worse than the sarcoid itself. For now I’m just going to see how things turn out and then cross that bridge if and when it comes.

I have to admit though, I am REALLY happy to be stepping down on the prednisone again! Now if I can only gear up for the 8 mile backpacking trip my son is going on this summer. Here is hoping.


Ps. My kidneys are hurting again… possibly stones again? I’m trying the lemon juice that I mentioned earlier to see if that will help. It appeared to work last time. I hope it will work again. I’ll let you know.

Here is my post on Kidney Stones: When life gives you lemons... kill kidney stones!